Monte-
Sorry to hear that you are having a rough time with finding a really good NS or even just an NS. I have encountered a lot of the same troubles but have been blessed a few weeks ago with a NS so close that comes highly rated, Dr. Cole. He's in Southern Utah. Where are you located?

I am located in eastern New Mexico almost on the border of Texas .It is a small town and it is 110 miles from Roswell ,N.M.and 110 miles from Amarillo ,Tx. ,it is also 254 miles from Albaqurque ,N.M. and 92 miles away from Lubbock ,Tx. ...This is my main delima the miles it takes me to get to a NS . If I could I would go back to the Denver ,Co. area but that is almost 500 miles away . I have heard there are some good NS in Huston ,Tx . but then there are the miles agian .And I don`t do very well with traveling because of the 3 syrnx`s in my spine....So I just am not to sure about wheather I will ever find that one NS that can help . I know there are some pretty powerful med`s out there but it is like I told the last NS , I don`t want to be taking the things because they really don`t know what the long term affects are . And I would still like to be able to function at least some of the time .

when things permit i would move to a large metro area again because you condition demands it. As for SM issues, there isn't anything i have read or know of that will fix it, just possibly relieve some of the issues, it's chronic in nature and have to adjust to it forever...having a good pain doc would seem to be the priority.

Curious to know who was your NS in Denver?

fleet
My NS in Denver was Dr. McVicker (he was the head of the dept) but Dr. Daley was the NS that did the shunt surgery . They were both with the Rocky Mountain Neurological Alliance but it is not there either and no one knows where my record are (thank God I got copies of everything) .

P.S.
The surgery was done at Swedish Medical on Old Hampden Road in Littleton ,Co......

Im not sure that moving would help you much, in all honestly. I live 20 minutes outside of Cleveland. We have both Cleveland Clinic and University Hospitals here. I have seen 3 NS, 2 Reg Neuro, 2 Pain Management Docs, No one knows what to do for me. Dr Benzel who is considered an expert in SM and is mentioned on a lot of sites related to SM, wouldnt even see me. He looked at my scans and since I wasnt a candidate for surgery, I was seen by another NS who simply told me that I couldnt have surgery and to see an reg Neuro. I have had the same Neuro for 5 years since I used to suffer from Migraines. I am on multiple Meds and thats pretty much all that she said we can do. There is no cure, for me there are no treatments, we just deal with symptoms.

Just curious, with your shunt surgery, did they do only one syrinx..?
I have 4 syrinxes and because of that they refused to even consider shunt or drainage type surgery. I was told that they wont stick my spine 4 times because it is too risky and that since they dont know the cause of mine itd likely just refill anyway.

By the way, I take 2100 mgs of Gralise Which isXR Gabapentin and 16 mgs of Zanaflex a day.
The Gralise helps the pain/ weakness and vertigo and the zanaflex helps with the back spasms and hand spasms. I am very tired all the time though.

Sandie,
I have 3 syrnx`s . they did the surgery on the one in my c-spine (from c-4 thru c-7 ) it wasn`t that wide but it was causing my spinal cord to swell and causing a lot of neurological problems (hands,feet ,legs,burning,numbness,weakness,pain and spasma) .The shunt was placed between c-5 and c-6 and just drains back into the spinal sack .They decided to drain it back into the spinal sack because the surgery was taking so long because of the amount of scaring and de-teathering they had to do .The surgery was supposed to take 7 to 8 hours but because of all the work that had to be done it was over 10 hours in surgery and another 2 hours in recovery .After being under so long I had a reaction to the anathysia and couldn`t keep anything down for 4 day`s after surgery . It was supposed to be surgery then home the same day to recover but because of the long surgery and reaction to the anathysia I had to stay 5 more day`s in the hospital .I did get some of the strenght back but the numbness and burning didn`t go away .
I am like you in that I don`t think that moving back to Denver would help ,simply because the NS that I had is no longer there and neither is the Rocky Mountain Neurological Alliance in which he was a partner .So I am trying to get to see yet another MS through the pain Doc ,who agrees that I need to get one on my case so that IF something goes wrong then he will be established with me and my case and can maybe do something to help .As far as future surgeries ,I don`t want them and hope that I never have to go through that agian . It may have to happen but I would rather not have to put myself and family through that agian .

Monte, sorry for delay. I didn't get email notice of response & family is visiting for a awhile.

I have gone to see Dr. John Oro (who's awesome!) He actually fixes other NS mistakes! Anyways, sorry to read you are still having issues, but establishing yourself with Dr. Oro (creame of le Creame) or the guy @ UCLA would at least you have one less thing to worry about.

My contract is about to end very soon and i look forward to leaving Co, mabe you can take my place, jk. I hope you do find a good NS just in case. ciao.

Monte, If you have not already, check out the ASAP mens group on facebook. It is one more place to exchange information. I have met the folks from ASAP and they are great and committed to moving SM into the limelight. I live in Alamosa, Co and drove to the Springs specifically to do a SM walk. Unfortunately, like many, I have found little help for my syrinx. I take Neurontin combined with Tramadol which works fairly well most of the time. I add vicodin PRN when the pain becomes unbearable. I am 68 years old and, based on what I have heard, have no interest in any kind of surgery. I hope you can find some relief.